Living life as a replacement pancreas for myself and my youngest!

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It is crazy to think that over 6 months have gone by since Nora’s T1D diagnosis – some days it feels like we have been her pancreas for years while other days we feel like we are just taking the first steps of this lifelong journey. Here are a few things we have learned along the way and feel compelled to share with the world:

Managing T1D for a child that cannot talk is like trying to hit a moving target while blindfolded. Some days we got it (YES!) and other days we are WAY off.

If she is having a temper tantrum we check her blood sugars. Big swings in blood sugars can lead to BIG feelings.

Just because her blood sugars are low doesn’t mean she is going to sit still or stop playing – find a phone or iPad STAT.

You can NEVER overpack snacks – they will always get eaten. Anyone with young kids can understand this one, now multiply it by 10.

Technology is a blessing, until it’s not. It helps you sleep better some nights and keeps you up other nights. It gives you comfort, but you’ll be on your phone more often then not checking her numbers and texting her care givers.

I just spent the last 30 minutes going through my pictures trying to find one that not only fit well on my website header, but was also representative of my Blog name – Type 1 of 3. I think I uploaded almost 10 pictures – mostly of my three girls, but a couple had me in them and there was one with just my youngest, Nora, and I. I tried all of them, but none fit well – both literally and figuratively. After going through this process, I finally settled on the exact same photo I had started with, which by the way, is so typical me. When I’m on the lookout for something specific, I find what I want but then continue looking in the very rare circumstance there is something I could want even more. Its called researching all my options, but back to my website…

My header picture is the exact same as it was before renaming my website from My (Extra) Ordinary Life to Type 1 of 3. Why is it the same picture? A picture of an ocean and some palm trees doesn’t represent my girls or Type 1 Diabetes. An even more pressing question – who cares?! Well friends, I care and this picture has a deeper meaning then just it’s face-value beauty 🙂

This picture was taken in Los Cabos by yours truly or maybe Ryan – I can’t remember and it’s really not that important who took it. What is important is that it is a reminder of a time when life was a lot more simple than it is today. This picture was taken on our first vacation away from the girls since our youngest, Nora, had been born. It turned out that it was also our last vacation before Nora was diagnosed with Type 1 Diabetes. Our lives completely changed after her diagnosis. The first few months were HARD and I grieved for the life that once was. Now, I believe in my heart that Nora’s diagnosis was a gift, albeit a crappy one at times. While, I am no longer grieving for the life we once had, I do miss it at times. Which is why this picture is the perfect one for my blog header – it reminds me to find the beauty in what once was, while moving forward with what is right in front of me.

This post was recently shared on MyID’s T1D blog, but it is important to me to make sure it has a home on my blog as well. This is my journey…

Everyone has moments in life that rock them to the core, ones that change their thinking or put them on a whole new path. For some, those moments are joyous things like marriage or the birth of a child. For others, those moments might be shrouded in challenge like the loss of something or someone important. I think those challenging moments are essential to living because you never know what you are capable of without them. Like many people, I have had numerous positive and challenging moments that have stopped me in my tracks, but my daughters Type 1 Diabete diagnosis brought me to my knees.

I have been actively managing my own T1D since my diagnosis over 26 years ago. The management of my T1D has just been a daily thing to do like getting dressed or making my bed. I didn’t go out of my way to share the literal ups and downs of living with T1D. My mentality was “it just is what it is” but I also thought the act of sharing would result in people sympathizing or pitying me for something that was my reality. I didn’t want people to feel bad for me, I wanted them to see past my T1D and see me. Of course, if someone asked me about giving myself an insulin shot or taking my blood sugar levels, I would talk with them about what I was doing and why but for the most part I keep my invisible disease invisible.

This all changed when my daughter was diagnosed with T1D in December of 2018 at the age of 18 months. Suddenly, I realized that I couldn’t continue to be quiet about life with T1D. I realized that sharing is a critical part of the journey with this autoimmune disease – the more I share, the more people know, and the more they know, the more they understand what’s its like to live with T1D. Without this basic understanding, there is nothing – no support, no love, no fight for a cure.

When I tell people about Nora’s diagnosis, generally the first response is “she’s so lucky to have you”. I give a smile and a nod but think to myself “I’m lucky to have her”. Her moment has changed me – the way I think about this disease, the way I interact with it, the way I talk about it. Now, I’m shouting from the rooftops that we have T1D and that we will continue to rise up and do our part to educate and fight for a cure.

A couple of people have reached out and asked me why I’ve decided to reboot my blog for a third time 😳. “Third times a charm”, I say with a big smile hiding the fact that I really didn’t know the answer to that question. But that’s the beauty of following your heart – sometimes it takes a while for your head to catch up.

Driving home from this mornings preschool drop off, I had been talking with one of my best girls about building my social media presence and she told me to tell my story the rest will fall into place. My story, huh? What is my story? I thought about this question during my entire short (and cold!) run. As I was cooling off, my head finally caught up to my heart.

When Nora was diagnosed with Type 1 Diabetes on December 17th, 2018 I sat in the hospital room that first night unable to sleep. My head was spinning, my heart was grieving. At 3:00 am, I finally gave up on sleep. I texted a couple of my best friends to let them know about Nora’s diagnosis which ended up being a big step of acceptance for me. After that, I googled everything I could related to young children with Type 1 Diabetes. I was looking for someone, anyone, who could share in my current situation and in their own words tell me that everything is going to be ok. Much to my dismay, all I found was clinical and factual information related to kids and Type 1 Diabetes. I know these types of websites are exceptionally helpful for families who haven’t had any experience with Type 1 Diabetes, but I’m different – I’ve been managing my own Type 1 Diabetes for over 25 years. But even with this significant experience, I was still looking for a connection to someone who might have had the same feelings I was while sitting in a dark and lonely hospital room, someone who might have some tips or tricks in managing this disease in a person as young as Nora. I hope that I can be the person I was looking for, and never found, when I was most vulnerable.

Type 1 Diabetes is not a death sentence – I’m living proof of this, but it is still a difficult and overwhelming disease to manage no matter if you’re 36 or under 2. Here’s to building a community, sharing in experiences diabetes related or not, and finding the extraordinary in the ordinary.